Fiona Tolich

Spending my time watching sport, chasing results and standing up for what’s right!

[Fiona Tolich @FeeTolich]

@76mulholland I wonder what firm is being paid good tax payer money to screenshot this tweet!

[Fiona Tolich @FeeTolich]

@GaryPayinda I know you’re a doctor but many don’t know about SMA. I am happy to tell you about it or you can chat to Paediatric Neurologist Dr Gina O’Grady. She will tell you what it was like giving a death sentence to parents and what it is now like offering treatment.

[Fiona Tolich @FeeTolich]

@GaryPayinda This is a hurtful tweet. I have dedicated years trying to save babies with SMA from dying from a treatable disease. I’ve now moved away from all of my support networks and life in NZ because the only way I can stop the progression of my disease is to live in Australia.

[Fiona Tolich @FeeTolich]

@GaryPayinda I have done all of this at my own cost. I was never paid. Why can’t we look at what the patient needs and health outcomes? There doesn’t need to be something behind every campaign? I campaigned because it was the right thing to do for the people needing access. To save babies.

[Fiona Tolich @FeeTolich]

@tomdaynz I have thoroughly enjoyed the freshness of TodayFM and the incredible journalism. This is very sad.

[Fiona Tolich @FeeTolich]

@Rachel_Smalley @GuyonEspiner Agreed. Incredible. I didn’t realise I had a fan club of just one though 🤭

[Fiona Tolich @FeeTolich]

@sammyboyfor @Rachel_Smalley Wow. I’ll leave it there. That’s a classic eugenics comment. I hope you never need access to life saving and extending medicines. Then your bubble may pop and reality will be a shock to your system.

[Fiona Tolich @FeeTolich]

@sammyboyfor @Rachel_Smalley Maybe if you looked at it through a different lens and saw that $100,000 on either set saved more than that in the health system, on social welfare costs etc you would have a better outcome for NZ and patients.

[Fiona Tolich @FeeTolich]

@sammyboyfor @Rachel_Smalley That’s actually quite a vile view. It is actually cheaper to keep people well, but we don’t look at the societal perspective. There is so much wrong with the model but same with your view on the value of a life.

[Fiona Tolich @FeeTolich]

@sammyboyfor @Rachel_Smalley They took years to fund a treatment for kids with SMA (baby motor neuron disease). The average age of death being 13 months old for the most common type… a treatable disease where it took so much anguish to get funding (and kids dying while waiting). There is so much wrong here

[Fiona Tolich @FeeTolich]

@sammyboyfor @Rachel_Smalley In the developed world we sit at the bottom for access to modern medicines. People (including children) have died while waiting for an international standard of care medicine. Even Ukraine in the middle of a war has funded medicines we don’t.

[Fiona Tolich @FeeTolich]

🙌

[Rachel Smalley @Rachel_Smalley]

Sue Chetwin, who Chaired the Pharmac Review, began her Executive Summary this year with this:

“It was the stoicism of the young woman who, along with her companion colostomy bag, had dragged herself out of bed to attend a meeting with me as head of the Pharmac review....

[Fiona Tolich @FeeTolich]

@Rachel_Smalley In case it comes up in a pub quiz. The FDA approved it in 1987!! So I was fresh in primary school when that happened, I was at the end of high school when they tried to get Pharmac funding and now my own kids are well into their school journey when we fund it!

[Fiona Tolich @FeeTolich]

@Rachel_Smalley You might need to give it context by posting your thoughts in some print based classifieds. Twitter came along over a decade after that application went in. That’s how old the application was. Heck, I didn’t even own my own mobile when that application was lodged.

[Fiona Tolich @FeeTolich]

@Rachel_Smalley 🤣🤣🤣

[Fiona Tolich @FeeTolich]

Wow @AllBlacks what a start to the Bledisloe Cup. What a game! Such controversy too! I enjoyed that! This game had everything. #AllBlacks #AllBlacksVsWallabies #decisiveref

[Fiona Tolich @FeeTolich]

Just posted a photo https://t.co/pPK0J1Sa5s

[Fiona Tolich @FeeTolich]

Leading cause of genetic death in infants. Treatable in 65 countries.. but not here. It’s cheaper to fund it than to have kids suffer… but we have a broken system that is prepared to let kids die. @Rachel_Smalley @HelenClarkNZ @UN #SMAawarenessMonth https://t.co/jBy8iSit3b

[Fiona Tolich @FeeTolich]

Waiting for the Live Stream to start for the Health Select Committee. Shuffled lots to be able to finally hear a response to the Independent Review into Pharmac and there appears to be technical difficulties. So disappointing.